Communication, collaboration and a vested interest in the well-being of children with special healthcare needs are essential elements of the successful management of the complex care pediatric patients at Gillette Children’s Specialty Healthcare.
Children with special healthcare needs — such as cerebral palsy, brain injury or other neurodevelopmental disabilities — often require a variety of procedures, medicines and subspecialty intervention as they grow older. Trying to keep up with these continual and changing needs can overwhelm parents and physicians alike.
“These are patients who require a tremendous amount of care,” says Madeleine Gagnon, MD, complex care pediatrician at Gillette. “We recognize that guardians and fellow physicians need help to support these patients, and it’s our job to support and coordinate that medical care.”
Collaborative, Comprehensive Care
The complex care pediatric program at Gillette encourages shared responsibilities and orchestrates a team of physicians, nurses, dietitians, social workers, administrative assistants and schedulers to help ensure that patients receive the comprehensive attention they need for an improved quality of life.
“Our pediatricians often operate out of a subspecialty medical home model,” Dr. Gagnon says. “We partner with primary care providers, subspecialty medical providers and parents in a model that is centered around the specific needs of children and young adults living with disabilities and chronic conditions.”
“These children often have a long list of associated medical conditions and need specialized support for a variety of organ systems,” Dr. Gagnon says. “Pulmonary, cardiac, gastrointestinal, neurologic — each of those areas that often gets owned by a specific specialist.”
One of the roles of complex care is to ensure that these needs are met efficiently and effectively without compromising one area of care in favor of another.
“Our job is to see the forest, not just the trees,” says Steven Koop, MD, Medical Director for Gillette. “We are auditors and brokers of care, experts who survey patients’ needs, organize their care and enable good communication between subspecialty physicians and primary care physicians.”
By facilitating communication and collaboration between a child’s many physicians and subspecialists, the team at Gillette helps broaden their collective knowledge base, drawing attention to the myriad ways these different elements and multi-organ conditions interact with one another.
“An intervention one subspecialist makes may affect another organ system that a different specialist is looking after,” Dr. Koop says. “Our role is to enable great communication between providers, foster knowledge sharing, help with patient safety and provide the best care possible to encompass all the patient’s needs.”
Time Well Spent
The biggest hurdles a primary care pediatrician faces when treating children who have complex needs are time and appropriate staffing. That’s where the Gillette complex care team enters the picture.
“Most of our referrals come from subspecialty and primary care physicians,” Dr. Koop says. “They recognize that their patients require an amount of care that is beyond a single provider, and they realize that they need assistance to help manage their patients’ comprehensive needs.”
Madeleine Gagnon, MD, complex care pediatrician, helps young patient Mahad and his mother manage his condition.
A patient referral is the first step of an in-depth assessment process. This process includes an introductory meeting during which the Gillette team meets with the patient and family and acquires and examines the patient’s entire medical history from multiple viewpoints, accounting for not only every organ system but also for the patient’s needs outside of the hospital and physician’s office.
“We truly use a head-to-toe approach,” says Jean Stansbury, APRN, CNP, pediatric nurse practitioner and member of the complex care team. “We get extensive histories — birth, past hospitalizations, surgical and a complete medication list — and then we break it out by system. Beyond that, we also account for community needs, such as education, transportation, home medical devices, benefits, Medicaid and more.”
From there, phone communication is established with the primary care provider to discuss the care plan proposed. A carefully crafted, thorough care plan is created. The plan serves as a roadmap for the upcoming three to six months and contains necessary action items, procedures, prescriptions and follow-ups. It is also a vital reference for the patient’s primary and subspecialty care providers, especially in the case of a medical emergency.
“This document is very useful during the patient’s clinic appointments,” Stansbury says. “We encourage parents to carry the most recent note in their backpack or purse, so that if they need to go to the ER, they can simply show that document and provide a snapshot of who the patient is, complete with critical pieces of medical history and care details.”
The document is updated quarterly or as needed with a member of the complex care team. The Gillette team serves as a centralized point of contact for planning, communication, organization and support among guardians, physicians and community services.
“It’s about taking a true team approach with all the providers,” Stansbury says. “We are all invested in transforming an often medical way of life into a high quality community-based life.”
Daily Life in the Community
By focusing on patients’ social, medical and community needs, the team at Gillette promotes patient transitions from the hospital back into routine life in home and community settings. They analyze what changes need to be made in the home, such as making room for medical equipment and installing ramps or lifts.
“Operating this clinic is very different than my previous experience with freestanding children’s hospitals. It is unique that our mission, vision and resource allocation are centered around children and young adults who require complex care.”
— Madeleine Gagnon, MD, complex care pediatrician at Gillette Children’s Specialty Healthcare
The team’s impact, however, extends far beyond private home life into areas such as education and travel to ensure children have a fulfilling life in the public arena. This requires coordination with guardians and patient care assistants, as well as continued contact with benefit providers, medical device companies and educators.
“Children with complex medical conditions deserve the same degree of socialization, education and enrichment that other children have,” Dr. Gagnon says. “Figuring out how to write their medical needs into an individualized education program, making sure they have the proper transportation to school and events — our job is to make these life goals a reality.”
Providing Care No Matter Where
Access to the services provided by the Gillette complex pediatric care team extends far beyond the state of Minnesota. The team also consults on patient cases no matter where the patient lives, working with physicians managing complex pediatric patients outside of the state.
Orthopedic surgeon Jennifer Laine, MD, works with Madeleine Gagnon, MD, complex care pediatrician, to coordinate care after young patient Domminic’s surgery.
“We work with all physicians regardless of disciplines or location,” says Karen Brill, Vice President of Patient Care at Gillette. “As long as they have that shared vested interest in a positive outcome for that child, we are eager and look forward to engaging with all variety of physicians and locations.”
Personal communication, either face-to-face or via telephone, is the chief way the team ensures that relationships with other care providers are fruitful for the patient. Gillette providers prefer live conversation to letters, and these regular interactions form strong bonds between different care teams.
Patients benefit greatly from the direct communication and free-flowing exchange of information the Gillette team embraces. Guardians have clear plans of escalation and know precisely who to involve when medical situations arise. Patients receive improved nursing at home, and the many physicians they see know whom to contact for specific information about systems and conditions outside of their expertise.
Specialized Focus at Gillette
For some patients, support from the team at Gillette follows them from childhood into adulthood. Through services provided by the Gillette adult clinic, transitional assistance can help guardians care for their children as they age.
“Our mantra is to not focus on limitations but foster all that our children can do. This isn’t just about navigating folks through a program or service line. It’s about navigating through life.”
— Steven Koop, MD, Medical Director, Gillette Children’s Specialty Healthcare
“The transition to adulthood can be very challenging,” Brill says. “It is sometimes difficult to find primary care providers who feel comfortable with an adult population who have had chronic conditions from childhood.”
A successful transition from the complex pediatric care team to a new adult healthcare provider is the goal. Judged on a case-by-case basis, patients move on to qualified adult medical providers who offer appropriate levels of support.
To refer a patient to the complex pediatric care program at Gillette, call 651-325-2200.